Meet the Rare Condition Passports

Rare disease in Australia

Rare is collectively common

Rare conditions affect millions of Australians. Behind every statistic is a person, family, carer and community navigating complex systems in search of answers, coordinated care and effective treatment.

• 1 in 12

  Australians live with a rare condition.

• 2 million+

  Australians are estimated to live with a rare disease, with impacts extending to families and carers.

• 625,000

  people in New South Wales are estimated to live with a rare condition.

• 8,000+

  individual rare diseases have been identified.

• 80%

  of rare diseases are genetic.

• 5 years

  is the approximate average time to receive a diagnosis.

• 50%

  of people with a suspected rare disease remain undiagnosed.

• 95%

  of rare diseases have no targeted treatment.

Sources: National Strategic Action Plan for Rare Diseases (2020); Palmer et al. (2023); Zurynski et al. (2018); Molster et al. (2016); Walker et al. (2017); and Dumbuya et al. (2025), as summarised in Rare Diseases NSW: Care Connect Cure, Professor Adam Jaffe, 19 May 2026. Figures are estimates and should be read in context.